MEEI tomorrow

[inmaine724]

So I see the oncologist tomorrow (Dr. Loeffler).  Since I'm so on the fence about surgery or radiation (although they want me to have surgery), are there specific questions you all have asked to help you make the decision?  I know there are lists on here of questions to take with me, but I just want specific ones that some of you have used.

Stressing about this appt.  And then they have me driving to Boston AGAIN on Monday to see the surgeon.  ughh...

Thanks!

...Danielle

[Jim Scott]

Danielle ~

Feeling stressed is about normal in your situation and I say that as someone who has 'been there'.  I underwent FSR following debulking surgery and my main question was: how much radiation will I receive? (27 gy - but every patient is different).

I recall asking about the effects of the radiation, i.e. hair loss, swelling issues, etc .  There were none, in my case but again, every AN radiation patient is unique and my experience is not a template for anyone else.  I also asked how successful this procedure had proven (this was in 2006).  The answer was '"very successful - high 90% range".  Good enough for me!  I had total confidence in my neurosurgeon and the radiation oncologist he hand-picked to work with on 'mapping' my FSR treatments for maximum efficiency with minimal amounts of radiation, which made everything much easier.  I was confident that these doctors (a) really knew what they were doing and, (b) were working in my best interests.  My FSR sessions were uneventful but proved to be completely successful (tumor died).  I hope you'll have a similar experience.  

Jim

[lholl36233]

Hi Danielle,

Just wanted to let you know I'll be thinking about you tomorrow.  Looking forward to hearing how it went.  As you know, the decision was made for me not to have surgery because of facial nerve concerns.  If both options were given to me, I'd have gone with Dr. McKenna's recommendation.

Good luck.

Laura

[dalern]

Good luck to you.  It is a stressful time.  The one thing I can tell you is to have a pre-written list of questions.  I would ask questions about complications, recovery and any long term affects of whatever treatment choice you use.  I always tend to ask the docs what choice they would make if it was their family member going through this, and why.  I'd also ask for statistics on outcomes for each treatment choice.  You know, they are just numbers, but it gives you a perspective.  If possible, take someone with you.  Another person hearing the same thing at the same time can be helpful.
Good luck
~Dale

[inmaine724]

Appt went well.  I absolutely love Dr. Loeffler.  He was so direct and friendly.  He told me that we would actually NOT be doing surgery, that it does, indeed, look like a Facial Schwannoma and that radiation (Proton) would be the course we would take.  I still have to see the neurosurgeon on Monday, to go through the neuro exam, but then I can start thinking about when to start this. It's not the greatest news, obviously, but I was happy and relieved that surgery was taken off the table, and that I can finally move forward with the whole thing.
Oddly, when we walked into the Oncology Dept, I had this weird overwhelming feeling.  I think it was the first time I felt a little freaked out.  But truly, Dr. Loeffler was awesome.  Extremely happy with all that he told me today, and am glad to finally have that guidance.


Thanks all!

...Danielle

[lholl36233]

Danielle,

Dr. Loeffler is the best.  I look forward to seeing him on 12/15 for my 1 year post proton radiation MRI.   I'm glad everything went well.  Let me know if you have any Proton questions.  I'm here for you!

Laura

[inmaine724]

Thanks Laura!  Did you have any side effects or any feeling at all from the radiation?  What were your symptoms before that?  Did they get worse initially, and then get better?

[lholl36233]

I had no side effects at all from the radiation.  Looking back, being on short term disability and able to sleep longer, I never felt an excessive tired, just a normal tired.  The only symptons I had were tinnitus and total hearing loss in the left ear.  4 weeks into the radiation, I started to notice an improvement in my hearing.  I asked Dr. McKenna about this in April.  He respects his patients enough not to pretend he has an answer when he doesn't.  I said to him, "you should look at my December MRI".  He said, "Oh, I will".  He said it like he meant in, he wasn't humoring me.  He wants me to come back in 2012 to see him and have a hearing test.  I plan on doing that after my second MRI which will be 18 months after the December MRI.

I'm so left handed I find myself getting back to my old habits of taking work calls on my left ear with confidence that was lost before I went to MGH for Proton Radiation.  Who knew?

Laura